Sometimes I wonder what other people think about heart parents and what they have to go through with their CHD babies.. How to describe the daily struggles, feelings, emotions, fears and tears?
I found this beautiful poem written by one of the heart mamas (Stephanie Husted) who captured “it all” perfectly. Literally every single word describes what Art and I have gone and are still going through...
'You passed me in the shopping mall…
(You read my faded tee)
You tapped me on the shoulder…
Then asked…”What’s a CHD?”
I could quote terminology…
There’s stats that I could give…
But I would rather share with you…
A mother’s perspective.
What is it like to have a child with a CHD?
It’s Lasix,aspirin,Captopril…
It’s wondering…Lord what’s your will?…
It’s monitors and oxygen tanks…
It’s a constant reminder to always give thanks…
It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held her…(I’d waited so long)
It’s knowing that I need to help her grow strong…
It’s making a hospital home for awhile…
It’s seeing my reward in every smile.
It’s checking her sats as the feeding pump’s beeping…
It’s knowing that there is just no time for sleeping…
It’s caths, x-rays and boo boos to kiss…
It’s normalcy I sometimes miss…
It’s asking do her nails look blue?
It’s cringing inside at what she’s been through.
It’s dozens of calls to her pediatrician…
(He knows me by name…I’m a mom on a mission)
It’s winters homebound…and hand sanitizer…
It’s knowing this journey has made me much wiser.
It’s watching her sleeping…
her breathing is steady…
It’s surgery day and I’ll never be ready.
It’s handing her over…( I’m still not prepared…)
It’s knowing that her heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that she’ll be okay.
It’s the wonderful friends with whom I’ve connected…
It’s the bond that we share…it was so unexpected…
It’s that long faded scar down my child’s small chest…
It’s touching it gently and knowing we’re blessed…
….It’s the need to remember we’re all in this plight….
It’s their lives that remind us we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow’
J.
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